Why I write

With recent "identity theft" from our friend's blog, I have been afraid to share this blog.  The last thing I want is for my writing to affect my child in a negative way.  From the beginning, the thoughts of protecting Isaac's privacy and rights have always lingered in the back of my mind.  I don't want to put him or any of my children in harms way.  I am usually trusting of the world and see it as a loving place, but then things happen, and I am reminded that I must not be naive to the dangers of the world and internet world.

Sadly, it's out there.  People do things that harm others.  It's not cool and it's downright scary.  That's why I have contemplated, "what is the best thing to do."  Do I privatize my blog and only have people I know, that I can send and email telling them that they can follow our story and continue to be prayer warriors and supporters of our little tough guy?  (Yes!  and a thank you is not enough to express my gratitude for my faithful followers). But what about the aunt that emailed me because her sister was having a baby with OEIS and wanted advice?  What about the mother with an older child that had never met another family with OEIS? (Who by the way had the same surgeon operating on our child!) And, what about the mother that has found out her child has these random set of birth defects.  The mother that has little hope, because she has been told her child could be in the hospital for months or a year.  Her child may never walk, be able to eat by mouth or urinate in a normal way?  What about that mother, who has been told she should abort her beloved child she has been carrying for 5 months.  She is lost and sad and confused.  She loves her child, but she has no face to give her hope.  She can only imagine sadness in her child.  How could she give life to a child that only faces adversity?

Let me tell you why.....because there is something much bigger in life than "being normal".  Isaac's story is about hope, but it is mostly about love.

Does this look like the face of a child without hope or joy in his life?  (Hardly, right?)  And let me tell you..... the doctors were right about some things and wrong about others; but the thing they couldn't tell me was this..... that he is happy.  That he has a cackle laugh that is contagious.  That he can charm you with his quick wit, yes, even at 2.  That he is bold and knows exactly what he wants.  That he is ornery as heck and enjoys it.  That he will tell you everyday you pick him up from school, "mommy, I missed you."  The doctors just can't predict how much love you will have for your child, no matter how long your hospital stay is.  No matter how many birth defects your child has and no matter how rare and unknown his health will be.

I remember being that mother.  Pregnant with her beloved child, without hope.  I was the mother scouring the internet at 2:00 am with my pregnant belly, moving through the motions and searching for an answer.  And you know what?  I found the answer, Isaac's diagnosis, even before the doctors could figure it out.  I found some blogs about children with OEIS.  And I saw their precious faces, their smiles of joy, and their families, that you could tell only had love for their child.  And it gave me exactly what I needed..... hope.  Hope that while I know it may not be an easy road, that our lives were not destined for isolation and grief.

There was a beautiful child waiting for us to welcome him and give him the extra love and care that he needed.  The internet can be a very scary place.  I don't even like to imagine the harm it can bring.  But it can also be a place of finding hope.  It can be a place to share stories and messages, so that we can make better decisions.  And so, with thought, prayer and perspective, I am keeping Isaac's blog public.  Because if I hide his inspiration to the world, then I am not allowing his disability to help others in need.  If I know this is how I can help share his story to help others, then I know his suffering will always give God glory.

So, with all that being said, please respect our blog, my children and all the families out there that put their lives out there for all to see.  It's not easy to share your life with the world, but sometimes, we know that sharing can help others.  Don't take that away.  Please respect all and take nothing from others stories, except hope, prayer and respect.

This time of year

The beginning of April will likely always mark a time of inner reflection for me.  The rainy skies dampen the earth and remind me of the tears that filled my pillow for the days and weeks that followed April 5, 2011.... The day of our revealing ultrasound.  That day, in just a single moment, in the words of a short phrase, my world forever changed.

While it is painful to revisit those memories, it is important.  It is through that pain of my journey that I am able to peel off the layers of ugly about myself.... judgement, prejudice, ignorance, anger, guilt, self-centeredness, fear....

Through time, tears, prayer, self-reflection, support of loved ones; I realized that God had a different plan than mine.  It didn't seem fair to me and I didn't understand why I couldn't just have my plan.  Hadn't I been obedient enough?  What had I done to deserve this?  I did not want His plan.  I wanted to run.  I wanted to run far from His plan.

But something stopped me from running.  It was larger than hope, larger than my faith in God.  No matter what I did to try to run, I couldn't.  This force was much greater than anything.

It was Love.  It was the love from everyone around us.  It was love from my husband. It was the love I knew of being a mother of Gabriel.   It was love for this baby boy within me.  I had loved him from the moment I felt we should have another child.  This child, Isaac Michael, was meant to be and I loved him.  I knew that I had to embrace his journey and follow God's will for him.  Isaacs's plan was no longer in my hands.... but now I know, it never was in my hands.

I have read countless blogs and books of other parents' journeys.... down syndrome, dwarfism, autism, spina bifida,  etc.  I can relate to each of them in some way.  Sometimes it is the thoughts of fear that we have as parents of children with special needs.  But most of the time, it is just about love.

I hope that the love from this blog, and other blogs, helps share with the world, that different is beautiful.  That weaknesses from one person, can help bring out the strengths in another and that acceptance of others, really means acceptance of ourselves.

Walk beside me

As a child grows and enters school, I suspect a fear of all parents is, "will my child have friends?"  And for parents with children with special needs, that fear extends to "will my child have friends that accept them; exactly the way they are."

I admit, I had these fears even before Isaac was born.  We all want to be loved and be liked, right?  So of course that extends to our desires for our children.  The other day I was given this picture from Isaac's teacher.  There are so many words I could use to describe it, but really, I think just looking at it is all one needs to feel the love from it.

As I searched for quotes on friendship, this was the best one...

“Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend.” 
― Albert Camus

Yes, exactly that.   My wish for Isaac; my wish for Gabe; my wish for Hila; my wish for all children.  Let us embrace this idea.  Because everyone deserves a true friend.

Party Trick!

Isaac has a special party trick.... when he is in college and wants to really mess with people, he can just lift up his shirt and share that he has no belly button.

Yep, no belly button.  Thanks to his omphalocele.  An omphalocele happens when the intestines and sometimes other internal organs grow into the umbilical cord.  They are sealed in a thin membrane.  When he was born, they cut his umbilical cord with special thread then two days later they carefully tried to push in his intestines and close him up.  He was only 5 pounds at birth though and pushing everything into his tiny body could have meant that it all burst open again so they didn't continue to close that up in his first surgery.  Instead, we actually painted him omphalocele with a special cream and skin grew over that place.  About two months later, skin had grown over his omphalocele and he had a flat, little belly.... special with no little button to collect dirt.  (As a side note, when he was 15 months old, they surgically closed up that part of his abdomen).

I am sharing this special trick with you today because tomorrow, January 31 is Omphalocele Awareness Day.  Omphaloceles can occur in isolation or with other birth defects.  The "O" in OEIS complex stands for omphalocele.  Omphaloceles can cause serious problems for babies and require many surgeries.  We are so fortunate that for Isaac, his omphalocele was one of his easier defects to repair.

So today, I celebrate my little "O" warrior and all of his dear friends that are fellow warriors.  They all have awesome party tricks to share with their buddies someday!  I hope that they are proud of their special bellies.

A bit busy

We have been a bit busy lately and I am finally getting around to writing again.  Not only did we celebrate Gabe's fifth birthday on December 19...

 but we also welcomed our baby girl into the world on December 23, Hila Faith! (For those wondering about the pronunciation, it is Hi-la, with a long I sound.)  She is named after my great grandmother whom I always admired.

Isaac joined Gabe in the ranks of big brother!  Here is our first family photo of 5!

Isaac and Gabe have both done well with the changes.  Isaac has always done things on his own timeline and there was no exception to accepting his baby sister.  Unfortunately, he was sick with a virus and ear infection the first week of her life.  He has not shown much jealousy towards her at all, just some indifference in the beginning couple of weeks of her life.  He really liked to tell her everything that was going on (because he is quite the talker these days), but he kept his distance.  Which was actually a blessing since he was sick!

But last week, he came over to Hila on my lap and gave her the tenderest touches and then said, "I want to hold Hila.  (or as he says it, Hiya).  Of course, I jumped at the chance and took as many photos as I could.

Gabriel has adored Hila from the beginning and it is so sweet to see him always want to love on her.

We were lucky to arrive home on the night of Christmas Eve so that we could spend Christmas morning with our two boys and our families that were all so wonderful to travel to us for Christmas!

We truly couldn't have asked for a better Christmas gift!  We hope that you all had a wonderful Christmas and we wish everyone blessings in the new year!

Hello from Isaac

I have to say, I have not been very good at updating Isaac's blog lately.   He has been doing well.  He is definitely growing and changing so much.  He is a very independent little guy these days and is embracing the world of being 2 years old.

He has been going to school 2 mornings a week and it has been so good for him.  He really loves it.  He goes to the school that his Aunt Gigi is a speech pathologist at and everyone has been so great.  He has had many opportunities likes riding a hand bike, standing in a mobile stander and hanging on a trapeze!

He absolutely loves his mobile stander!  This picture was taken his first time in it.  This is when he realized that he could stand..... and move!

He is talking a lot these days.  We are often charmed by his sweet words, and then moments later, wondering where our sweet boy went as he demands what he wants and boldly tells us no.... the life of a two year old.

Some of his favorite phrases:
As we go into school : "Hi Fishies!  (as we roll by the fish tank).  I want to say his to my Aunt Gigi".

Even when I am standing right by him: "where's my mommy?"

When he's feeling lazy: "take me right there."

When he sees something cute:"awww.  I want it."

When he doesn't like the situation he's in: "I want to go to nap in my bed."

That's all for now.  Happy Thanksgiving week everyone!

unexpected surgery

Last week we went to Cincinnati for Isaac's 6 month follow ups with his urologist and colorectal doctor.  Both appointments went pretty well, except we did learn that Isaac has a small hernia that needs to be repaired.  His urologist is actually moving to Morgan Stanley Children's Hospital in NYC and his last day is October 19th in Cincinnati.  Luckily, he was willing to squeeze Isaac into his schedule.  This means that Isaac will have surgery on Monday (the 14th).

It should be a pretty small surgery and last about 45 minutes.  We are not sure yet if he will stay overnight, but most likely he will stay over night just to be sure he recovers well.  This surgery was definitely unexpected, but we are so thankful that his urologist is able to operate on him before he moves.

Which leads me to the next thought.  We are pretty bummed that Isaac's urologist is moving.  He really is very knowledgable and passionate about helping children with OEIS.  He has a great opportunity in NYC and willing to continue to care for Isaac in any way that works best for us.  We are hoping to have a urologist either in Cincinnati or Columbus just to be sure we have someone for little things that may come up, but otherwise we plan to continue Isaac's urological care in NYC with Dr. Alam.  He has done such a wonderful job caring for and operating on Isaac and we trust Isaac in his care.  It is not ideal to travel for medical care, but we know this is best.  Many families travel all over for all their child's medical needs and we feel so blessed that we have really been close to great doctors and haven't had to travel more than 2 hours until now.

On another note, Isaac started school in early September and he is loving it!  He has had no trouble at all when I leave him.  He usually just goes to playing and boldly says, "bye Mom!"  He has gotten to use a stander and even jump on a trampoline!